Finding the Strength

Saturday 30 June 2018

I recently received a moving article by Canadian Barbara Smith, who was diagnosed with M.E. in 2000. She openly revealed distressing events in her early life, and described the ongoing challenges of living with M.E. Barbara bravely included some upsetting subjects in her article, and I felt honoured to publish her story on M.E. Support. You can read an extract of her incredible journey in this month’s blog post.

Life started out pretty happy for me. I was born in 1962. I was an only child and was pampered. I still remember the pretty princess dresses my mum dressed me up in, and the photographs taken at a studio. I remember my mum being pregnant with my brother, and how proud I was that I was going to be a big sister. Life was good then, and I hold those memories dear to my heart.

I was six when my brother was born. Shortly after his birth my mum was put on a new migraine medication. She suffered from severe migraines, which would have her vomiting for days at a time. We had to keep the house dark and be really quiet when she had one of these migraines, and she got them often. Unknown to any of us at the time, this new medication made my mum psychotic. It took me over three decades to find this out, after a lot of researching and putting two and two together. While she was on this medication my mum was physically and mentally abusive to me. I could never figure out what triggered an attack, and they never made any sense to me. The things she said or thought made absolutely no sense. I never knew when she was going to fly off the handle. Sometimes it was when I came home from school, sometimes she would haul me out of bed in the middle of the night. I just never knew what to expect. What I do know is that I became terrified of going to sleep, terrified of my bedroom door banging open and being hauled out of bed to be beaten in the middle of the night. I started becoming a restless sleeper and I began sleepwalking. This was a daily thing until my mum went off this medication when I was about 11 or 12 years old. By this time, the damage had already been done. I remember feeling very lonely, feeling unloved and that my mum really wanted a boy instead of a girl. But I became even more confused after my sister was born a year later and neither of my siblings was treated the way I was. I harboured a deep resentment towards my mum and began to wonder if, perhaps, I wasn’t my mother’s biological child. Of course, this experience coloured my view of my mum and created a hostility and mistrust that lasted until shortly after my dad passed in 2008.

I started getting sick when I was about 12 or 13. I started having trouble keeping anything down. After several months of this my mum finally took me to the doctor and I was diagnosed with a “nervous stomach”. I was put on pills to settle my stomach and things seemed okay for a while. But this was just the beginning of things to come. I now know that, for me, vomiting is one of the first signs that I am suffering from sleep deprivation. When I hit my teens, I was always tired and couldn’t seem to keep up with the other kids. I just seemed to tire faster, to need more sleep than others, and I caught flu bugs and colds more often. Of course, this was blamed on puberty, etc. and just left at that.

I left home when I was 18. I constantly complained to doctors that I was tired, often needing a two-hour nap after work. On weekends I would sleep 13 or 14 hours at a stretch, and still needed a nap later in the day. At first, I was told it was because I was still young and growing (especially since I didn't hit puberty until I was 16), then because I had small children, then finally, I must be depressed. I don’t know how many times I heard “you are fine” or “there is nothing wrong with you”. I started becoming ill more frequently, seeming to catch every cold and flu bug that went around. Not only did I get sick, but I was always sicker than anyone else. Every bug wiped me out for days, or sometimes weeks. When we bought our house, I was exposed to mould (which I later found out I am extremely sensitive to). Then I started getting bouts of tonsillitis almost monthly (which I never had as a child), along with urinary tract infections and severe constipation. 

I left my first husband (who was also mentally and physically abusive) just before I was 30 and developed an “I’ll show you” attitude with the doctors. I figured that if I tried to maintain the kind of life that everyone else did, something would give, and the doctors would finally realize that there was something really wrong with me and that I wasn’t a hypochondriac. Little did I know how bad that first crash would be.

So I went back to university full-time while looking after two small children. They were five and three when I left my husband and were about seven and five when I went back to school. My oldest suffered from undiagnosed Asperger’s Syndrome, and my youngest was diagnosed with mild cerebral palsy when she was six months old. My son exhausted me. I constantly had to be thinking two steps ahead of him, and every year was a battle with the schools to get him the education he deserved. He was finally diagnosed when he was 21 and I was so relieved to know that there was a name for what he had.

My daughter required daily physical therapy, which I did at home. As she became older, she was put in swimming lessons and I used to take my kids on daily biking trips so that my daughter’s muscles were kept limber. When she was first diagnosed, I was told she would never walk. With the physiotherapy that I did, not only did she walk, but she placed third in the county track and field meet when she was in sixth grade.

I was in my third year of university when I crashed the first time, becoming totally bedridden within months. I fought the inevitable, but my body finally gave out on me. I was beyond exhausted. I had difficulty sleeping at all, and when I did sleep, I wasn’t refreshed. Walking became extremely difficult, each step requiring an enormous amount of energy, and often my legs just didn’t have the strength to support me and I fell. I have tried to explain this to others and the best analogy I can come up with is likening it to a car running on gas fumes. When those fumes are gone, there is nothing left until you have the money (or proper sleep) to fill the tank again. I feel like I have run a marathon, and have nothing left to give. I became reliant on my 12-year-old daughter to do all the chores, including the banking, grocery shopping, cooking and paying the bills. My bed was my living room couch, where I could monitor the kids and be there if they needed me, my contact with the outside world was my computer, and my once sharp mind became filled with cotton balls. Over time I adapted, learned how to use a calendar and check it numerous times a day and started making notes weeks before I went to my doctor appointments, so I wouldn’t walk out thinking “oh, I meant to ask him that”.

 

Please continue to Finding the Strength for part two of this article.

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News

2 Dec 2018
The Sunday Times Article
30 Nov 2018
Where the Journey Begins
26 Oct 2018
Forward-ME Meetings
18 Oct 2018
New Article Published
13 Aug 2018
M.E. Organisations
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
28 Apr 2018
The Synergy Trial

 
 
 

News

2 Dec 2018
The Sunday Times Article
30 Nov 2018
Where the Journey Begins
26 Oct 2018
Forward-ME Meetings
18 Oct 2018
New Article Published
13 Aug 2018
M.E. Organisations
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
28 Apr 2018
The Synergy Trial